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Saturday, May 28, 2011

Is she sick?

I spend a LOT of time watching Pumpkin -- trying to figure out if what she's got going on is baseline "normal" for her or if it's seizure behavior. Parenting a special needs child is difficult enough. But I've got to answer to so many people about her health. I've got a Medicaid nurse that calls once a month to go over all the day-to-day details. I've also got her family doctor, her neurologist, our agency SW, CPS, CASA, and all the lawyers. Despite my usual amounts of confidence when it comes to parenting young children, I find myself second-guessing my decisions with Pumpkin regularly.

Take today for example...

I slept in this morning. I was uber tired. Mr. Amazing and Herman are gone on a weekend excursion together. I had the bed to myself. I was all sprawled out and comfortable. The fan was blowing and it was good sleeping I say. Good sleeping.

At about 9:00AM though I figured I had better get myself up. My littlest cherubs had been up for a couple hours. They can get themselves breakfast and watch TV all on their own. As for Pumpkin though, I knew she was still just in her bed. I never know when she wakes up. I know that she likes to sleep in some on the weekends. But when she wakes she never does anything to get my attention. She doesn't even get out of bed. At best, she'll reach over and get some books off the shelf that is next to her bed. But, for the most part, she just lies there.

I went into in Pumpkin's room this morning and she hadn't moved at all. No books or toys were in bed with her. For all I know, she had just woken up. I got her dressed and did her hair without incident.

TT & Bart were watching SpongeBob. This just happens to be Pumpkin's absolute favorite thing in the whole entire world!!! She did not indicate any desire to eat breakfast. She crawled up on the couch to watch TV. Rather than take her away from her favorite thing, I got a bowl of dry cereal for her and handed her a sippy cup of milk. Pumpkin seemed fine as she sat there. She even ate the whole bowl of cereal.

I turned off the TV at 10:30. By 10:45 Pumpkin was crawling up on the love seat like she was tired. She was turning her face towards the cushions. She seemed rather "out of it". This is where the guess-work comes in. Why was she doing this? Was she mad because the TV got turned off? Was she simply tired because we were up late the night before? Did she have seizures all night?

I took Pumpkin by the hand and directed her to our guest bedroom downstairs. I covered her up with a blanket and tucked her in for a nap. I left the door open though so I could easily check on her. I also didn't want her to think she was being forced to stay in the room.

Pumpkin fell fast asleep and was out for around an hour. At noon I noticed she was awake and asked if she wanted to get up. She told me no.

She stayed in the bedroom until 5:00PM. I went in about every 30 minutes to see if she wanted to get up. Each time she responded with a "no" and then pulled the blanket up over her head.

For the first hour or two I was OK with this. By mid afternoon though I started to get worried. It's not normal for a child who is almost six to simply go into a dark bedroom and lie there by themselves all day doing nothing. She didn't have a fever. I never saw her have a seizure. She couldn't tell me what was wrong. She doesn't have those kinds of language skills. It was just plain weird.

But it wouldn't have made sense to take her to the doctor either. What would I say? She wants to lay in a dark bedroom and do nothing???? That's not exactly a medical emergency.

At 5:00PM I asked her if she wanted to eat. She popped right up and got out of bed. Of course, when I tried to fix her ponytail she got very upset. But this is typical for Pumpkin. When I offered her some yogurt she gave me a dirty look. But again, this is typical for Pumpkin. She ate the yogurt without complaining along with the rest of dinner. When she was done, she got down from the table and went in to her toys.

Right now she's in the living room playing with her toys. You'd never know anything was out of the ordinary today.

I never quite know how to handle these situations. They tell me she never wants to nap at school. But I see Pumpkin get "tired" like this almost every day she is home with me. I've been making notes on a calendar that I'm going to bring with me to her next neurology appointment. But everything is so vague. Her doctor only seems to want to know about actual seizures. And I see so few of those that all I can do is shrug my shoulders and say, "I don't know for sure". And since Pumpkin can't tell me a single thing about her health, does anyone know?!

It's complicated. The judge isn't going to let bio mom have unsupervised contact with Pumpkin until mom has been "trained" on Pumpkin's condition by a doctor. Pumpkin is never going to be normal though. The seizures aren't going to go away. Pumpkin isn't going to suddenly burst out with meaningful language. I wonder if a judge will ever trust that mom can actually manage her condition. And from what's happened so far with this case, all those people involved in deciding what should happen to Pumpkin, keep asking for my thoughts. Which is why I start second-guessing myself on days like this. Things I say about Pumpkin's condition are going to determine when (or worst case scenario...even whether or not) mom gets another chance at parenting Pumpkin. So how note worthy are today's events?

Of course I'll tell her doctor. And I'll tell any of the rest of the crew that asks. But I'm never going to get used to this level of special needs parenting.

2 comments:

I wonder if they have any type of seizure monitoring device? Something that would attach to her and would record her brain activity, to tell how often she has seizures, even when they aren't obvious? They have things like that for heart conditions... but then again that newer technology is probably not available to a child in foster care.

They do have extended tests. In fact, Pumpkin had an 11 hour EEG done back in early March. Her neurologist told me that she has extensive "abnormal brain activity". She didn't have any actual "events" during the EEG but I guess things aren't normal by any stretch of the imagination. When I questioned another doctor about the difference between seizure events and abnormal brain activity, I was told it's an arbitrary line drawn in the sand.

I'm still not sure what I'm supposed to do with that information. I suppose if I keep pressing the issue they might do a longer EEG test - possibly in a hospital. They also make backpack devices for extended testing at home. I'm just not sure if it's even possible to bring her seizure activity under control more than it already is. I have no idea what level of healing we can get to -- especially since we're combating severe mental retardation along with the epilepsy. Her quality of life is never going to be wonderful.

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The Cast of Characters

Cherub Mamma (me):Work at home mom trying to juggle the needs of all the members of the house while drinking copious amounts of caffeine and trying to not eat too much chocolate.

Mr. Amazing is the wonderful man that I've been married to for 21 years. He's a terrific husband and an amazing father to all of our children. Our marriage is something I am thankful for every day of my life.

Cherub 1 (AKA Herman): 18 year old boy. Amazing son of mine that is a true teenager! One moment he's mature, responsible and a contributing member of society. Then, in the next moment, I'm scared to death for his future and I feel like a failure of a parent. Herman is a kind and compassionate kid who is a wonderful big brother. Herman has ADHD and depression that is relatively well managed.

Cherub 2 (AKA TT): 11 year old boy. TT is incredibly insightful for his age. He looks at life differently than most. He is active and rambunctious. He's also my favorite cuddle bug. TT was our first foster placement ever when we fostered in Iowa. He was adopted at birth. TT struggles significantly with anxiety and was recently diagnosed with dyslexia.

Cherub 3 (AKA Bart): 10 year old boy. Talks more than anyone you'll ever meet. Is the happiest child I've ever known...except when he's ticked off. Bart is very positive and has an outlook on life that many in the world would benefit from if they could be a little like him. (According to my mother we should all #LiveLifeLikeBart.) Bart seems to find joy in the smallest of things. He also has significant ADHD (heavy on the "H") and keeps me on my toes!!

Foster Placements:

(January 26, 2015 - March 2, 2015)The Neverland Kids stayed such a short time because respite homes couldn't be found when my father suddenly passed away. I needed to make an urgent trip across the country and CPS insisted that I disrupt vs. respite care and return to me. It was not my choice to disrupt but I had to be there for my forever family!Captain: 5 year old boy. Oldest of a large sibling group (not all placed with us) including Pirate and Tinkerbell. He suffered a horrific trauma and we're all just getting to know each other. Pirate: 3 year old boy. Speaks a mix of English, Spanish and gibberish. Definitely needs speech therapy. He's very active and so far needs a lot of redirection.Tinkerbell: 13 month old little girl. Perfect baby in every way if you don't factor in the horrific trauma she was a part of. She has seen things that if I saw would make me a shell of a human being for a long, long time.(December 2013 - October 2014)Daisy: Came to me at 7 months old and left the day before her 17 month old "birthday". Daisy is a victim of Shaken Baby Syndrome. Caring for Daisy involved lots of work with specialists and therapists for PT, OT, ST and vision. When she left she functioned at about the developmental age of 8-12 months. (She was learning to walk but couldn't self-feed well at all and had almost no language.) Daisy went home to her mother, Kori. I pray daily that Kori is able to meet all of Daisy's needs and that she is able to protect Daisy from future abuse.Daisy came back in to foster care February 24, 2015 along with her newborn sister, Dandelion. CPS was finally able to get enough evidence that Kori was allowing contact between Daisy and her abuser. Sadly, my home was full with the Neverland Kids and I couldn't welcome Daisy back. My agency also wouldn't let me disrupt the Neverland Kids to take Daisy (as my relationship with Daisy had been much longer and so few homes are capable of meeting Daisy's medical needs). The Flower Girls initially went to a shelter. I was given no information about their new foster home when they were finally placed several days later.

(May 30, 2014 - June 20, 2014)Wispy: 20 month old little boy (when he was with us) who is tall and thin and has beautiful, blond, wispy hair. He arrived on a Friday night because his current foster family was in need of emergency respite care. He was supposed to stay three nights. The situation changed though and his first foster family is no longer going to foster. After much prayer, Mr. Amazing and I decided to make our house his home so he wouldn't have to move again and find yet another mommy in his life. CPS thought differently though and in order to make their paperwork easier, they moved him away from us back to his home county.

(December 2013 - May 2014)Ricky: Came to me at age 16 and left six months later at age 17. He's a victim of The System and - seriously - did not need to be in formal foster care. But due to the courts and things that happened beyond anyone's (except the judge's) real control, he was with us instead of with his godmother. At the hearing in May 2014, the judge finally saw reason when CPS couldn't give a good reason for him to not be with his godmother. He's still in foster care but will now age out where he belongs. We remain in a lot of contact!

(June 2011 to Sept. 2013)Much was written about these two wonderful children. Our hopes of intervening in their case and ultimately adopting them were dashed in September 2013. The children live with their grandmother in a situation that was never proven to be safe.-- as of October 2014, these cherubs are still in foster care with their grandmother. She has not been given full custody yet. I pray for them often.Dolly: Came to me at 3 1/2 and left the day before she turned 6. Sister to Dude. Gorgeous little girl that loves babies more than anything. Has a charming smile and a twinkle in her eye.Dude: Came to me at 2 1/2 and left at age 5. Brother to Dolly. Adorable dimples make his smiles melt my heart.

(Jan. 2, 2011 to Sept. 2, 2011)(Sept. 13, 2011 to Sept. 21, 2012)Pumpkin Pie: Came to me at 5 1/2 years old and was 7 when she left. Pumpkin was easy to care for but was very developmentally delayed. She functions around the age 18-24 months. Pumpkin completely opened my eyes to special needs parenting and the joys (cough cough) of special education. After much needless waiting and System screw ups, Pumpkin was finally placed with a very loving aunt and uncle.

(Sept. to Nov. 2010)MissArguePants: 8 year old (at the time) foster daughter. Textbook case of PTSD, ODD, anxiety and attachment disorder. Made life very interesting!TurtleTurtle: 9 year old (at the time) foster daughter. Diagnosed with PTSD, anxiety, depression and more. Also made for an interesting parenting experience!--- MissArguePants and TurtleTurtle left our home after boundaries were crossed that threatened the safety of our forever children.

Other Characters:Mr. Wonky: not an actual person, but rather a state of dysregulation. Mr. Wonky "visits" our home regularly. He will visit all my kids from time to time. But he likes to complicate things for Cherub 2 the most.

Rainbow: currently the recruiter at our licensing agency. Prior to her current title though, Rainbow was our actual licensing worker. She has known our family for many years. She's the reason we're staying with our current agency as opposed licensing through a new one.

Cheerleader: currently the placing worker at our licensing agency. However, because our agency is incredibly small, and because they have extremely high turn-over, Cheerleader is also our family's licensing worker. She meets with the kids in our home as required by their plan and makes sure we're following all the minimum standards.